One year ago today, I was discharged from IMC in Murray. I had fruit and cottage cheese for lunch with the most delicious lemonade ever. People bitch about hospital food, but in our current state of evolution, it is delicious, and of course, nutritious.

My mom was sitting on the couch in my room and I remember having never felt better. My health had been in disrepair for a long time and my mental health was even worse. Imagine how happy I was to find out that I was indeed going to live. A very friendly pacific islander wheeled me to my moms car and off we went. I didn’t want to be wheeled out, but I guess wheelchair exits are mandatory. Mom and I went shopping for some new toiletries and I was able to go in with her. I could actually walk around the store with her without feeling like I was going to collapse in giant lump of failure.

A year later I am still fighting the fight and enjoying small victories everyday. I passed my GED with above average scores and I am taking Japanese lessons from my dad. I’m still unemployed but I am applying for jobs everyday.

I couldn’t have got to where I am without the love and support of my family and friends. Whether it was in text or in person, I couldn’t have done it alone. Thank you to everyone and thanks for stopping by.

Today I had a follow up with the heart clinic. Lovey group of people with a singular goal: get you healthy. It’s their master plan if you will. Today revealed my weight was up quite a bit and my breathing was worse. The first thing I thought of was “what the cuss?! we had a master plan!

My diet and exercise have been the same since leaving the hospital in March with the exception of fluid restriction. As I am not retaining fluid, I do not have to ration. Pretty rational.

In fact, if anything, my exercise has become better. Longer distances, less breaks, working up a real sweat. le sigh

I also informed them of my predicament with my insurance coming to an end on Saturday and being out of pills. Plans were made for that and I will still see them on a monthly basis while we wait for medicaid to answer or for me to find a job. I submitted about 15 applications this morning, so I am hoping for a bite out there. Fishing is supposed to be peaceful. Not job fishing (I don’t hunt).

One strange thing happened today that had nothing to do with my health. More to do with my paranoia. A slender man came in to have his defibrillator checked. The same device I denied to be put in. Not that strange considering I was in a heart clinic. The strangeness, he was born on 11/19/1963. 22 years older than I. Maybe this is something all 11/19’ers share. Maybe CGB Spender had something to do with this illness too. Preparing for colonisation. Or maybe I should stop watching X-Files before bed. Mayhaps. Thanks for stopping by.

In life, just as in film and television, there are second takes. Tertiary takes. Multiple takes in which we try to get things just right. We’ve been brought up to make a great first impression, because you only get one. We are also brought up to not judge a book by its cover. First impressions are just the cover of your personality. So we are taught to be charming and alluring covers that no one is supposed to judge. Life. What an exhausting and aggravating series of contradictions we put up with.

The only reason I brought up multiple takes is because this is the third revision of this entry. Not just in my wording or witty title linked to both theme and the music I am listening to as I write, but in the theme as a whole. Usually once I start on a theme, I just go on until I am tired of grinning at my own wit. This time, it was different.

So many emotions are running through my head and I can’t focus on one. The only thing I know is I don’t want to be a downer. The first two attempts focused on the sad and scary events to come. Why focus on that? I need to make a good first impression to those that this is a first entry for. If you are new, don’t judge me by my cover. Don’t judge me even though I have thought and rethought what to say so that if this is the first time for you, you will love and accept me. You will take me off the shelf, read me cover-to-cover, and bug your friends about this great new book you found.

I am stuck. Stuck up. Stuck up on this shelf. I am trying to dust off the cover and patch any torn bindings so you won’t run at first glance.

My focus is on the week to come. Another doctor visit. Another birthday. Another attempt to remain calm when my only thought is to run far away. This week will be good. I’ve already written three days in a row and ran the last two days. Things are off to a steady start. Let’s hope for the best as I reach to rip my heart from my chest. Thanks for stopping by.

A little over a fortnight ago I was in the emergency room. I went by myself this time which felt a little strange, but in a good way. Finding comfort in solitude is my new goal.

I had gone in because I was fainting and had chest pains that just became too immense to ignore. You tell anyone in the ER that you are a heart patient and they DO NOT mess around.
Tests ordered:

EKG

Chest X-ray

Full blood panel

Exhocardiogram

and another test that I am dedicating an entire entry to. First time I’ve had this one. Hooray.

As I lay hooked up to multiple machines, I could only talk to myself. ERs are busy places and can be super lonely. While in my own head, I start freaking out over the echocardiogram. What if my ejection fraction went down?What if they found some blockage? Which of course led to, I’m going to die.
I fully believe I am my own worst enemy.

The doctor comes in and orders 1 litre of fluid as I am super dehydrated at this point. He tells me that he called my cardiologist. My heart stopped.

Doc: Are you familiar with the term “ejection fraction”?

adn: Of course. I’ve been a heart patient for almost a year now. I know lots. Quiz me! I tend to get annoyingly joke-y when I feel that death is at my door.

Doc: Do you remember what it was at your last echo?

adn: 30-35%

Doc: Well it’s gone up to 35-40%

He said it so matter-of-fact-ly. That is great news! I am still going up! He tells me he has called my cardiologist to inform him. Now I feel like a total bother. It’s now 2 am and he called my cardiologist to say “all’s well”. Just like those buzzards in Robin Hood. 12 ‘o clock and all’s well!

Dr. Stephen Miller happens to be an amazing cardiologist and looks just like my friends dad and Jeff Conaway put together in some well aged hunk stew. He put me on a heart monitor, again. So now my heart beats are recorded and sent to Skynet for evaluation. I thought it would be super funny to really exert my heart and have the monitor suddenly stop. First thought was coitus, but I have no partner. So I went for an extra long run and when it was over, took the leads off and took a shower. I don’t know of anyone has seen the spike yet or even cares. Regardless, I had a hearty chuckle. Get it? Hearty? Damn I am clever.

Anyway, the whole point of this boring story was to confirm my heart is on the mend. Just in time too. I suppose. Thanks for stopping by.

What can I say anymore? It has been confirmed that I am indeed, the weird kid. This really didn’t come as a shock to me and I would assume didn’t come as a shock to anyone that knows me either. However, in a life full of uncertainty it was a genuine surprise to receive confirmation of…well….anything really. Feel left out? Prepare to have speed increased so you are caught up.

Part of my new life includes nearly weekly blood test. Levels in my metabolic panel change so frequently and my doctors all give a damn that they monitor the hell out of me. I pretend sometimes to be upset by this, but I occasionally enjoy being taken care of. I always turn into a little boy when I am sick that just wants his mom to make him soup and tell him everything will be ok. Well I have been sick for almost a year now, so the attention waxes and wanes from beautiful to annoying. I realise this is my own brain making these determinations, so I will return to the story.

Today I had a blood test to check my kidney function and potassium levels. For some funny reason, potassium and I do not get along. It’s pretty funny because my gangy always used to talk about bananas and potassium. So I assumed I was one of the only kids my age that was watching for that. Side note to that side note, I can only spell bananas by singing the Gwen Stefani song. I get lost in the “na”s so I sing it. jnan found that funny as do I.

Back to the blood…

For as long as I have been getting these tests, I have wanted to ask for a vial of my own blood. Why? Why not? I sit in a chair and am poked until I bleed. What’s my compensation (besides of course the reassurance that I am getting healthy…but that’s neither here nor there)? As I am pricked I stare at this clear plastic cubby full of different coloured tubes. Each tube coded for what test it is with a different additive. Medical science is very fascinating. Today, with my newly discovered courage, I asked the adorable phlebotomist my question. I thought it was reasonable, but I got the strangest look ever. Before she could answer, because I felt a huge “no” coming on, I countered with, “What, will you get in trouble?”
“I don’t think so” she replied, still trying to gauge if I was just screwing with her, “no one has asked before. I don’t see why not, it is your blood”.

With two tubes in her hand she says she will give me the first one. Confused I asked if she didn’t need it. I learned that when running a metabolic panel they need to remove all air from the line so as not to taint the sample. She was just going to throw away my blood. My blood. She reattached the first vial to fill it a little more and gave it to me. It has no additive since it is used only to clear the line. Now I sit here with a 3.0 ml vial of blood filled halfway. To everyone that has heard me recount this story, it has been met with the same facial response as the phlebotomists. I am ok with being weird. I am the kid with a vial of his own blood on his nightstand. What do you think Stephen King has on his nightstand? Think about it. Thanks for stopping by.

Here I am, awake and alone at 3:30 am. Popping hydrocodone due to a very sore back as a result of my recent seizures. As I sit here, I fully comprehend why people get high and watch cartoons. The pill takes it’s effect and I turn on the one and only, Pink Panther. Classic movies and even more classic cartoons. At this particular moment, the panther is chasing a basketball that appears to be possessed. This ball has a mind and the intent to run away. Already adorable and funny, right? Across from the park there is a volleyball tournament taking place where a volleyball decides it too wants to run away. The two balls meet in the park and fall in love and get married. They have children and live happily ever after. What joy! Here I sit alone, a little afraid, and a little sad, and now, hopeful. These two balls of different sports found love in each other despite their differences. How brilliant is that?! Well, I liked it. You don’t have to be so mean about it. Geez.

Other things of note, I have temporarily dropped out of school. With the uncertainty of my health and it’s new complications, I don’t want to risk failing classes due to a lack of attendance as a result of hospital stays. I am going to take this time to focus on health and start again in the spring semester. This decision did not come lightly, but had to be done.

Speaking of health, yesterday I had my MRI. What a queer experience that was. When I was done my dad asked how it went. The best way I could describe it was, I felt like I was being faxed. I was secured in this head restraint (the MRI was specific to my brain) and the conveyor takes me in. It sounds like an ancient 14.4 modem firing up and trying to send me to the matrix. Why oh why didn’t I take the blue pill? So 45 minutes later and I was successfully magnetically resonated. The results are being sent to my neurologist and we will know more next week. Also next week, a visit with the heart failure team. Ah the life of a geriatric trapped in the sexy body of a 25 year old Adonis.

The Lortab is continuing to take it’s wonderful effect and I am starting to spell lots of things wrong, so I will end this entry here. I love each and everyone that reads this and I am a lucky boy to have such beautiful people in my life. I will let you know more about my brain as I find out, but until then, thanks for stopping by.

Well friends and family, it is almost a week later. What has happened to me you might be wondering. I am glad you asked!

School has started and I am truly loving it. I am still the shy boy that doesn’t talk in class, but I enjoy class. So it’s a plus.

Health? It’s good and uncertain. My heart is a strong 30-35% ejection fraction. Hooray! What was I worried about? I should have went with my gut and waited until Dr. Miller had a chance to review it, but I didn’t. I freaked out and made some stupid decisions. In light of all that, we are still pushing exercise and medication. I need to be above 35% at my next echocardiogram to be considered in the clear. My hopes are definitely high for the upcoming months.

I have yet to hear from my neurologist to even see her, let alone have the test. I am even looking forward to the electroencephalogram (EEG) because it may provide some information on insomnia and nervous ticks I have. As I write this I am going on no sleep and I can’t quit tapping my foot. Maybe a new life is just around the corner. I am excited to keep going on this journey and will provide updates all along. I hope you are enjoying these posts and I look forward to more updates. Thanks for stopping by.

Hello dear readers. I want to preface this by saying, I have the greatest friends and family a boy could ask for. Today while hanging out with my friend Malora, I had a seizure. Even better, I was driving at the time. I have no idea what happened and awoke to her on the phone with 911. I was trying my hardest to start my car and keep driving, but wasn’t allowed. Good thing because I was truly terrified of what had happened. The fact that I just awoke and couldn’t remember anything was very scary. Of course, the way I deal with this fear is humour. I kept making jokes much to the chagrin of Malora and my family. So for today I had a few firsts. One of which was the ambulance ride and the other was a CT scan. Although, a CT scan isn’t totally different than a few of the heart tests I have had, but it was still a first.

For now there is no cause and I have to get an EEG. Now I have a team of cardiologists and a neurologist. This is not my beautiful life. I feel ok and I am relaxing for now. My body is super tight and there is always the worry that this is a new lifelong ailment. I hope for the best and will keep you updated. Thanks for stopping by.

A warning to any readers of this post: this will contain coarse and vulgar language. The last week has been the most unstable times of my life emotionally and I even lost a few days. I will tell you all about it, I am just warning you, you might not like me after reading this.

I am in bed with the most uneasy feeling I can recall in my life’s history. What has caused this unsettling? Bad life decisions disguised as healthy rebellion.

If you know me, or have followed this blog at all, you know that I have heart failure. Being so young, it has been a strange and even scary experience. Though with the support of family, friends, and modern medicine, I am still alive and doing quite well. I post my updates of doctor visits filled with praise for the boy who fought for his life. Things were going up and up. Then, last week it hit me.

I had an echocardiogram nearly 6 months after my first one. My main cardiologist was amazingly hopeful for my progress simply due to appearance. With the weight loss and demeanour of someone that just won the lottery, he was hoping for the best. My last appointment with him he seemed confident I was making a full recovery. The technician spoke to Dr. Miller speculatively about the results. He said ejection fraction at 25%. Normally I wouldn’t put much stock in what anyone other than my doctor said, but Dr. Miller specifically said that this guy knows his stuff.

Being at 25% I am still in failure. Since it has been six months and I have been on maximum doses of medications, the next step is surgery. Heart surgery. Are you kidding? What happened to the progress? Dr. Miller wants to put in a defibrillator to prevent a life threatening arrhythmia that my weakened heart can’t pull itself out of. That’s what kills heart patients. Not slowing to a 0% ejection fraction, but an erratic heartbeat that your heart isn’t strong enough to correct.

My first thought upon hearing this news was “fuck this”. I am not getting heart surgery. Let it kill me. I have spent the last six months being ever so careful and scared of doing anything that would jeopardise my health. Now? Who cares. I have been given a death sentence of an unsure timeframe. My reasons for not wanting surgery are many. First and foremost, I am already $3,000 in just medical debt from this experience. Not to mention the near $8,000 in unsecured credit card debt due to living off of it both while unemployed and employed. Why would I want to add another $10,000 in bills to cover a surgery that I will spend the rest of my disabled shitty life paying off? It doesn’t add up. Secondly, defibrillators aren’t 100%. They could detect failure improperly and take control of your heart when you don’t need it to. I don’t need to keep worrying. I live my life in fear and I hate it. Cut to that night, I had procured some Cabernet Sauvignon and proceeded to drink myself stupid. The next morning I skipped the anti depressants and just popped lorazepam all day. Needless to say, I turned into a sobbing mess and a moron. I called a girl I like and left a 7 minute voicemail consisting of crying, singing, and silence. Then my sister in law comes over and I try to get her to beat me up. I called another girl professing an untrue undying love just so she would know in case anything happened. The next two nights I continued this binge of self-destruction, convincing myself that it was an act of rebellion that was justified. What has living my life alcohol and drug free done? Nothing. So in my petty and fucked up mind I kept on going down. Saturday night I was told half of what I did and Sunday night my sister in law told me the other half. I divulged information that no one needed to know. No reason except for my judgement had been impaired.

So tonight I lay in bed with calm music playing and a tear soaked face wondering what it accomplished. If anything it strengthened a knowledge and resolve to stay off those substances. I don’t have self-control. I have issues and a wonderful genetic history of addicts. Isn’t it funny how we all feel immune to the dangers and warnings of the world? On Tuesday I have a second appointment with Dr. Miller to go over the full results now that he’s had a chance to look at the test. Wednesday I start school and I feel excited and scared. So impatient and unprepared. And now I have told everyone that wants to know, my very stupid actions over the last week.

Conclusions.

I have discarded the remaining lorazepam and will find other means of attacking my panic. Meditation, exercise, kitten petting, etc.

To my mother, I sincerely apologise for my defiant words towards you today. I know you know they were said in jest, but I would be lost without your love and support.

To my dad, thank you for helping me with everything you have been able to. Our relationship wasn’t the greatest when I was a kid, but I am happy to call you dad now instead of Russ.

To my siblings, I apologise for all actions and words that have offended you. I am truly grateful for you and terrified of life without you. I will try and be a better brother.

To my extended family, your thoughts and well wishes have meant so much to me. In any form you have chosen to pray or think of me, I can tell you with certainty, it helped.

To my friends, I don’t think I did anything to any of you except to show the monster that lives in me. If you choose to seek asylum from his terrors, I understand. If you choose to stay with me, I will do my best to keep him calm and under control.

To myself, remember to think of these promises and where you would be without them. Don’t forget who you are and what you stand for.

To my heart, I am sorry you are broken. I wish I would have taken better care of you. Even now as you feel like a stone buried deep in my chest, I love you. I hope we can work this out.

To a strangers and passers-by, I hope you find comfort and love in your life. I hope you are happy. And if by some chance you’re not, we can always talk. I’m happy to listen.